Abstract

Friday, February 3, 2017

Long day's journey into night

Anyone with Alzheimer’s who still has his or her wits intact
is likely to have forebodings about the disease, no matter how many years the
passenger has to sail to arrive in that dark, forbidding port. The final journey, technically the late
stage of Alzheimer’s, can go on for many years. The final stage, as I
understand it, can go on for many years with what I might call the soul, or if
you prefer, the psyche, still intact. But what to do when the person with
Alzheimer’s is just a shadow of his or her vital past? In the book Before I Forget: Love, Hope, Help, and
Acceptance in Our Fight Against Alzheimer’s, the authors, including the
celebrity maven B. Smith, who has the disease, make the point that the late
stage of the disease is not all confusion and misery. There are still pleasurable
moments, as I understand it, in the joy of being with loved ones and looking
through treasured photo albums, among other social activities.

Recently, one of Massachusetts’
oldest institutions—the Massachusetts Medical Society, founded soon after the decisive
American Revolution battle of Yorktown in 1781—was in the news for its
provocative position on right-to-die legislation. As Patricia Wren, the Boston Globe reporter who wrote the
article, noted that back in 2012 the medical society opposed the referendum. The
reversal, Wren commented, came at a time when “death with dignity” is gaining
traction, driven by some medical organizations.

Will that privilege extend to
Alzheimer’s patients in their terminal stage? Until recently, I assumed that
the answer was no. Last year I learned that even Oregon’s pioneering
right-to-die legislation does not permit doctor-assisted suicide if the person
is deemed incompetent on account of Alzheimer’s or some other form of dementia.

But then I came across the website
of End of Life Washington [endoflifewa.org], a Seattle-based organization that
appears to be able to provide a route out of a Catch-22 for people who want to
die with dignity without devastating their loved ones’ financial and emotional resources.
A two-page, single-spaced statement offers up a wealth of questions as well as
answers.

“How can I maintain dignity or
ensure control over my dying after I become incompetent? How can I or someone
else end my life if I become completely demented? If you are the caregiver, in
many cases one’s spouse, how do you go about making the grave decision to stop
providing life-sustaining nutrition?” The statement goes on to note that while
many people would prefer to die naturally than be kept alive in the very late stage
of Alzheimer’s, these wishes are not always honored.

End of Life Washington’s role is
to make sure that the person with dementia makes clear his or her intention
before she or he is no longer competent to make such a decision. As an example,
the organization describes an anonymous person, under the alias “Mary,” as
someone whose parents both had Alzheimer’s, leading to Mary’s eventually developing
the disease as well. End of Life Washington decribed Mary as a strong-willed
woman, who cared for each of her parents as they succumbed. “After acquiring a
pledge from her physician to refer her to hospice as soon as she was deemed
eligible, she voluntarily stopped eating and drinking,” leading, over time, to
her death, in accordance with her wishes.

This approach, of course, remains
controversial. It’s not only the Catholic Church that has qualms about what
might be deemed as euthanasia. Many doctors have concerns as well. There is
good reason why the Hippocratic oath—Do
no harm—has endured for roughly 2400 years. But I like the idea of being
spared the torment of the disease’s terminal ravages. And I suspect that most
of my Alzheimer’s disease cohorts would prefer that final option as well.